The Economics of Dementia Care

Austrian Health Economics Association (ATHEA)1st Conference

Vienna, 28th November 2014

Adelina Comas-HerreraPersonal Social Services Research Unit (PSSRU)

London School of Economics and Political Sciencea.comas@lse.ac.uk

@adelinacohe

Acknowledgements:

• Quite a few of the slides here have been borrowed from presentations by Martin Knapp, who has kindly shared them with me.

• I also acknowledge infographics kindly provided by the Alzheimer’s Society.

• The opinions, comments and interpretations of all the material presented here do not reflect the views of my current and former co-authors and research funders.

The future is by definition uncertain…

… but one thing we know is that we will need to spend much more on the care of people with dementia than we are spending today.

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WHY DEMENTIA?

Why Dementia?

1. The burden of disability associated with dementia is rising faster than any other cause.

2. Significant and increasing % of health spending. Largest cause of need of Long-Term Care.

3. Huge costs to society, and in particular to families of people with dementia

The slides that follow are from an infographic produced by the Alzheimer’s Society, based on the very recent Dementia UK, 2014 edition report.

ECONOMICS AND DEMENTIA CARE

The Production of Welfare

Resource Collection:General taxationSocial InsurancePrivate InsuranceIncome & savingsUnpaid care

Purchasing BudgetSocial CareHealth CareOthers…Opportunity Costs

CommissioningProvider Budget

User Needs & Preferences

Resource Inputs: StaffBuildings ConsumablesEquipmentUnpaid carers

Intermediate Outputs:Service volumeQuality of careCasemix

“Non-resource” InputsEntorn socialCaracterístiques individuals Actituts

Final OutcomesChange in user health status, quality of life…Family & carer effectsSocietal impact

Adapted from: “Production of Welfare Framework”, Knapp M (1984) The Economics of Social Care, Macmillan, London.

Policy / practice themes

Resource Collection:General taxationSocial InsurancePrivate InsuranceIncome & savingsUnpaid care

Purchasing BudgetSocial CareHealth CareOthers…Opportunity Costs

CommissioningProvider Budget

User Needs & Preferences

Resource Inputs: StaffBuildings ConsumablesEquipmentUnpaid carers

Intermediate Outputs:Service volumeQuality of careCasemix

“Non-resource” InputsEntorn socialCaracterístiques individuals Actituts

Final OutcomesChange in user health status, quality of life…Family & carer effectsSocietal impact

Adapted from: “Production of Welfare Framework”, Knapp M (1984) The Economics of Social Care, Macmillan, London.

Financing Partnership & Integration

Prevention

Commissioning & Markets

Choice & Control

Technology of Care

Co-production & carer support

OutcomesEquity

Efficiency

Dementia: great case for Health & Social Care Integration

Source: http://pathways.nice.org.uk/pathways/dementia

THE KEY QUESTION TODAY IN DEMENTIA CARE:

How can we afford to meet the future needs of people with dementia and their carers?

1. Finding ways of decreasing the future numbers of people affected by dementia

2. Ensure we have adequate care financing mechanisms

3. Make sure that we “spend well” on care

1. Decreasing the future numbers of people affected by dementia

• Helping/encouraging people to adopt healthier lifestyles to reduce the risks.

• Better management of other chronic health conditions.

• Drugs that moderate symptoms and, eventually, finding a disease-modifying treatment!

Dementia Risk Factors:

Source: http://www.inmindd.eu/media-centre/dementia-information-in-mindd/

Modifying Risk Factors:

Norton et al Lancet Neurology 2014

These are the known risk factors for development of Alzheimer’s disease:• Diabetes• Midlife hypertension• Midlife obesity• Physical inactivity• Depression• Smoking• Low educational attainment

“Around a third of AD cases worldwide might

be attributable to potentially modifiable

risk factors”

2. Ensuring we have adequate financing mechanisms

• 2/3 of the £26.3 billion cost of dementia in UK shouldered by carers and people with dementia (Dementia UK 2014, published by the Alzheimer’s Society).

• Public expenditure on social care in England has not been keeping up with increased need*

*Between 2005/6 and 2012/13, after standardising for changes in need it has been estimated that net social care expenditure decreased by almost £1.5 billion, as a result of reductions in coverage: Fernandez J-L. Snell T. and Wistow G. (2013). Changes in the Patterns of Social Care Provision in England: 2005/6 to 2012/13. PSSRU Discussion Paper 2867. http://www.pssru.ac.uk/archive/pdf/dp2867.pdf

Determinants of future dementia care costs

• Demographic changes.• Changes in prevalence (by severity).• Availability (and propensity to provide) unpaid care.• Structure of the care system.• Financing system: generosity of public finance• Relative price of care and other goods and services.• Economic growth and other macroeconomic factors.• Values and public expectations about the quality, range

and level of care.• Other factors? Quality/adaptability of housing, pensions…

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Public spending on LTC as % of GDP, 2010-2060. Base case scenario

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BE BG CZ DK DE EE IE EL ES FR IT CY LV LT LU HU MT NL AT PL PT RO SI SK FI SE UK NO

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2060 basecase

Adelina Comas-Herrera

Source: The 2012 Ageing Report: Economic and budgetary projections for the EU27 Member States (2010-2060). European Commission.

Public spending on LTC as % of GDP, 2010-2060. Base case and Coverage Convergence scenario.

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BE BG CZ DK DE EE IE EL ES FR IT CY LV LT LU HU MT NL AT PL PT RO SI SK FI SE UK NO

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2060 coverageconvergence

Adelina Comas-Herrera

Source: The 2012 Ageing Report: Economic and budgetary projections for the EU27 Member States (2010-2060). European Commission.

LTC systems and economic sustainability

• Although demography is a major driver of LTC expenditure, other changes, such as shifts from unpaid care to paid care may have an even bigger impact in a number of European countries.

• Affordability is largely measured as a % of GDP (mostly from “official” economic forecasts), different rates of economic growth will be the key to what can or cannot be afforded.

3. Making sure we spend well on dementia care (1)

• Martin Knapp distinguishes between “good” and “bad” costs of dementia:

• “bad costs: care and treatment due to – late or missing diagnosis– unavailability of good quality– unplanned crisis admission into hospital, or – breakdown in community support resulting in earlier

admission into a care home than necessary”.• “good costs: Appropriate and effective treatment and

care responses to needs of individual and carers, following consultation around their preferences”.

http://www.pssru.ac.uk/blogs/blog/what-does-dementia-cost/ by Martin Knapp

3. Making sure we spend well on dementia care (2)

We can use evidence from research to help shift the balance from bad to good costs.

MODEMA comprehensive approach to modelling

outcome and costs impacts of interventions for dementia

2014-2018@MODEMProject

A collaborative studyLSE (PSSRU)• Martin Knapp• Adelina Comas-Herrera• Raphael Wittenberg• Bayo Adelaja• Margaret Dangoor• Josie Dixon• Bo Hu• Daniel Lombard• Klara Lorenz (PhD student)• David McDaid• Amritpal RehillLSE (Social Policy Dept)• Mauricio Avendano• Emily Grundy• Sanna Read

Southampton University• Ann Bowling• Jitka PikhartovaNewcastle University• Carol Jagger• Andrew KingstonSussex University• Sube Banerjee• Nicolas FarinaInternational Longevity Centre-UK• Sally-Marie Bamford• Sally Greengross

The challengeWe hope to find a cure for dementia, but even if it is possible, it is still quite a few years away. In the meantime, we can do much through prevention and improving care.

How can we provide high quality care and support for people with dementia and their carers in ways that are:

• acceptable to them

• at a cost considered by society to be affordable.

Research questions1. How many people with dementia will there

be from now to 2040; and what will be the costs of their treatment, care and support under present arrangements?

2. How do costs and outcomes vary with characteristics and circumstances of people with dementia and carers?

3. How could future costs and outcomes change if evidence-based interventions were more widely implemented?

Interventions, costs and outcomes• Interventions of interest– Prevention (e.g. lifestyle, nutrition, exercise etc.)– Treatments (e.g. medications, cognitive stimulation and other

therapies)– Care and support arrangements (e.g. telecare/tele-health,

respite, carer training and support programmes, training for care staff)

• Costs and outcomes– All resource impacts (health, social care and other), including

resources of people with dementia, families and communities.

– Quality of life, clinical and lifestyle effects– Carer outcomes

Intervention - e.g. CST• Intervention– Cognitive stimulation therapy for 8 weeks– Includes reality orientation, reminiscence

therapy) compared to usual care and support.• Costs and outcomes (8-week follow-up)– CST had better outcomes (cognition and QOL),

but also marginally higher costs– CST looks more cost-effective than usual care –Maintenance CST (another 24 weeks) – good

QOL and ADL outcomes– … also looks cost-effective (not published yet)

Intervention - e.g. START• Intervention– Individual therapy programme (8 sessions with psychology

graduate + manual)– Techniques to understand and manage behaviours of person

they cared for, change unhelpful thoughts, promote acceptance, improve communication, plan for future, relax, engage in meaningful enjoyable activities.

• Costs and outcomes (8-month & 24-month follow-up)– More effective than standard care and no more costly (from

NHS and societal perspectives) – at 8m and 24m– Cost-effective when looking at costs and outcomes for carers

– again over both 8m and 24m – Reduces care home admission rate for people with dementia

over 24m

MethodsEngage with people with dementia, carers and other stakeholders at all stages.

Project:– N of people with dementia over the period to 2040– family or other unpaid support available to them– costs and outcomes of services and unpaid support.

Review evidence of effective and cost-effective interventions for people with dementia and carers (incl. on-going studies)

Collect data to cross-walk between measures in studies and population surveys

Gather experiential evidence from people with dementia, carers

Simulate wider roll-out of evidence-based interventions on outcomes, costs, patterns of expenditure

Legacy model so that commissioners, providers, advocacy groups, individuals and families can access our findings and methods, and make their own projections of needs for care and support, outcomes and costs.

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Epidemiological model

• baseline characteristics: socio-demographic, lifestyle and disease (CFAS II & ELSA, 65+) projected to 2040

• interventions that prevent or delay cognitive and/or functional impairment

• tabulations of expected duration in different health states in presence of dementia, with w/out other diseases and by key characteristics, e.g. gender, age)

• led by Prof. Carol Jagger, Newcastle University

Interventions modelling

• led by PSSRU (LSE)• Models of the impact of different interventions

on service use, costs and outcomes• Based on review of evidence• Will also estimate lifetime costs of care for

different sets of needs and circumstances given: – existing treatment and care pathways– alternative care pathways (wider roll-out of

interventions)

Macro-simulation modelPSSRU macro simulation projection model: ‐• future numbers of people with dementia • severity and physical disability (CFAS II)• long term care service use ‐• associated public expenditure • quality of life (outcomes)

under variant assumptions about: • trends in mortality rates• cognitive impairment• supply of informal care• availability of effective interventions• unit costs of care.

And finally – a legacy tool

We will develop a publicly available legacy model (and associated media) for others to use.

Commissioners, providers, advocacy groups, individuals and families will be able to access our findings and methods, and make their own projections of needs for care and support, outcomes and costs.

Some research challenges…

• We are still not very good at measuring the indirect costs of care, particularly unpaid care

• What happens to outcomes and costs when you “stack-up” interventions?

• Outcomes: combining the outcomes of people with dementia and those of carers

• Understanding better the impact of changes in severity of dementia and quality of life

Blog Posts:

How unpaid carers “pay” the costs of dementia, LSE Health and Social Care Blog, 12 September 2014, by Adelina Comas-Herrera Involvement in PSSRU’s MODEM project, LSE Health and Social Care Blog, 14 September 2014, by Margaret Dangoor What does dementia cost?, Personal Social Services Research Unit Blog, 12 September 2014, by Martin Knapp

Related projects

• Prime Minister’s Challenge• Dementia Scenarios Modelling: G7 Dementia Legacy Event (an

advance on MODEM?)– Knapp M, Comas-Herrera A, Wittenberg R, Hu B, King D, Rehill

A, Adelaja B (2014) Scenarios of dementia care: what are the impacts on cost and quality of life? Report to the Department of Health, Personal Social Services Research Unit, London

• Cost of Dementia Study for the Azheimer’s Society– Prince M, Knapp M, Guerchet M, McCrone P, Prina M, Comas-Herrera

A, Wittenberg R, Adelaja B, Hu B, King D, Rehill A, Salimkumar D (2014) Dementia UK: second edition – overview, Alzheimer’s Society, London

Thank you for your attention

• http://www.modem-dementia.org.uk/• On Twitter: @MODEMproject• Email: a.comas@lse.ac.uk